Peripheral Neuropathy

[Zolabudd]

I wonder if anyone has any advice about neuropathy and how to deal with it? My partner has suffered from various complications during his 42 years with Type 1. He is 46. The latest problems relate to peripheral neuropathy in his hands (and, less so, his feet). They are either burning very painfully or numb and he gets very upset about this, not to mention the fact that it reduces his everyday quality of life.

We live in the UK and he has been given tablets which are supposed to take the pain away. The doctors simply offer the advice that he should take as many as he needs to relieve the pain (they're receptor inhibitors I think) but he's reaching the point where no matter how many he takes his hands still hurt really badly.

Does anyone know of any other effective method of helping with this problem (other than surgery)? We would be most grateful.

[Zolabudd]

Many thanks to you both - I'll go and investigate further.  It's so nice to see a forum where there are people in a similar position so I'll lead my partner in this direction as well!  Thank you again.

[Larry68]

I also have had type 1 a long time (41 years), but my peripheral neuropathy started long ago (after about 10 years). Your partner seems to be either in very good control, or very lucky. I was told to take B vitamins about 20 years ago, and that, coupled with better control, put an end to most of the pain. I took a 50 mg B complex (50 mg of each B vitamin). If I took more, the pain returned. I have since found that Aplha Lipoic Acid is a good treatment (since the 50's in Germany) and a recent study at the Mayo clinic substatiated this. As for B vitamins, I believe it was high doses of B6 that increased my pain, so I am now taking a supplement of 1000 mg of B12 in addition to the theraputic dose of Alpha Lipoic Acid (600 mg daily). I have done this for 6 months and I belive i am actually regaining some feeling in my feet, which lost most sensativity to heat and pain many year ago.

Please note that this is what seems to work for me, and my physician does not object (she does not believe in supplements). Please consult with your physician first if you wish to try this approach. DOn't expect instant results, either. It took a few months on B vitamins to notice any effect.

In my experience, pain killers had no effect on the pain of neuropathy.Good control is essential in preventing further progression and pain. I hope this gives your partner some other avenues to investiate.

Regards,
Larry

[Larry68]

I also have had type 1 a long time (41 years), but my peripheral neuropathy started long ago(after about 10 years). Your partner seems to be either in very good control , or very lucky. I was told to take B vitamins about 20 years ago, and that, coupled with better control, put an end to most of the pain. I took a 50 mg B complex (50 mg of aeach B vitamin). If I took more, the pain returned. I have since found that Aplha_Lipoic Acid is a good treatment (since the 50's in Germany) and a recent study at the Mayo clinic substatiated this. As for B vitamins, I believe it was high doses of B6 that increased my pain, so I ma not taking a supplement of 1000 mg of B12 in addition to the theraputic dose of Alpha Lipoic Acid (600 mg daily). I have done this for 6 months and I belive i am actually regaining some feeling in my feet, which lost most sensativity to heat and pain heat many year ago.

Please note taht this is what seems to work forme, and my physician does not object (she does not believe in supplements). Please consult with your physician first if you wish to

[Larry68]

Sorry for the accidental imcomplete posting

[JDRF-Team-dm]

Dear Zolabudd,

Thank you for contacting us. This is a very difficult complication of diabetes. Please understand that none of us here are physicians, but volunteers who either have type 1 diabetes or have a family member dealing with a person who has it.

My son was diagnosed 20 years ago and has slight neuropathy in his feet. He is not in pain, but does experience some numbness. I am so very sorry that your partner is going through this and I admire your active research into finding a solution.

Neuropathy is one of the most common complications of type 1 diabetes. It can present itself in many parts of the body. I am not sure what medication your partner"s doctor has put him on, but in this situation I would like to suggest that you seek a second opinion. Remember, I am not a doctor, but taking "as many pills as it takes" does not sound like very reasonable advice.

I know that tight control of his blood sugars is very important and can help in some cases to reduce complications. I do understand how complications can impact the quality of life. My son has neuropathy of the stomach and this has impacted his life in many of the same ways. Quality of life is so very important and I understand that.

I did do some personal research on treatments and would like you to check out a website that I trust very much. It is from Joslin and Harvard. Joslin is one of the best diabetes research hospitals. It is www.joslin.harvard.edu/education/library/neuropathy.shtml. This sight has great information on neuropathy and the latest treatments. Both hospitals are very up to date on the latest information.

I also know that others will be commenting on this forum with their own experience, as did Larry. Watch for other postings.

Please let us know how you are both doing.

Best To You Both,

dm